James Foote
Member
- Relationship to Diabetes
- Steroid Induced Diabetes
- Pronouns
- He/Him
Hello to all,
Sorry for spelling etc I have dyslexia and rely on auto-correct so I hope this makes sense to you all.
We all know how tech has massively improved diabetics treatment but we so know these units are not cheap and not always easy to get on the NHS. Now I can only tell you how I managed to get it with the help of diabetes.org and there advice.
When I was diagnosed with steroid induced diabetes it was not much of a shock but was not welcome news. When my diabetic nurse special told me I had diabetes inasked for the Libre 2 and she told me ask the nurse she may be able to help then the nurse who I have known for years was fantastic and even showed me here computor that she could not give me the tech but may be I ask the GP so I made a GP appointment and he said why are you not on the complicated diabetic list, I have colitis and some slipped disks pushing on my spine causing a lot of pain so I have morphine and Valium when it is really bad then every 6 months they burn the nerves so the pain can’t get through. He would pass me to the diabetic team and they could give me the unit he would even advice that I should have it.
I rang my GP a number of weeks later to ask when the appointment was coming and they said you had it on sch a date did you not go. “i have not had any appointments though” well the letter says you don’t qualify according to NICE guidelines. My wife drafted a letter to the D team to ask for them to change their mind, this letter is on my medical note but we received no reply.
I took advice from this site and contacted the Lancashire and Cumbria care board who listed and said they would help and they applied for my medical records. Biggest problem is you take morphine or Valium or both I will not wake up if having a hypo. I also decided to contact NICE and they are brilliant and though she said I can not comment on your case I will give you an email to make it clear we are not an excuse not to give the Libre unit and if the doctor thinks you should have it then they should prescribe it. Yes I thought. Months of nothing and this was a big step.
I then noticed my GP now operate a triage system where you fill out a form on line so unlike the letter which they can say they never have seen it this hs to be read. I stated how scared I was of having a hypo and not waking up and had already had a few 3.4s but my wife was working from home on these days. One of the questions at the end was who do you think can help you and my reply was “the person who can prescribe the Libre 2 for me please. I sent this in on a Friday and on Monday I received a text saying I have prescribed the Libre 2 for you at it is at your chemist. Now I noticed it was a one off so when I rang L&C care board they said this does happen and you have to keep asking for it on repeat however they would ring my GP. I was told I just needed to ring my GP every time I need the Libre but to ask for a repeat each time and in the end they will add it to my repeat prescriptions.
Now I had a justification in my concerns but every one who feels this equipment will help them had to push for it.
This may be controversial but I wish the NHS would allow donations toward these things so if I paid £400 per year can I have it not ideal but it may mean others get the unit without having to pay £1300 per year.
I hope this helps someone and any questions I will be happy to answer. I self funded a glucose meter and strips and was testing 7 times a day but the Libre 2 has already changed how I deal with my diabetes and to be fair I seem to be eating more. I have lost close to 3 stone and still a long way to go I will never be in the correct BMI I have a 52inch chest for crying out load but I have gone from a 4 or 5 times xl to just XL. The 2.2 alarm was very scary and I did feel very unwell the glucose gel thing was so difficult to swallow and only lifted me a small amount and we still had a walk to get to the cafe this was a big lesson and an eye opener because without my wife there I would of collapsed it took me the rest of the day to recover. With great advice from here I have reset my alarms to give me more notice.
Stay well everyone and be happy
James
Sorry for spelling etc I have dyslexia and rely on auto-correct so I hope this makes sense to you all.
We all know how tech has massively improved diabetics treatment but we so know these units are not cheap and not always easy to get on the NHS. Now I can only tell you how I managed to get it with the help of diabetes.org and there advice.
When I was diagnosed with steroid induced diabetes it was not much of a shock but was not welcome news. When my diabetic nurse special told me I had diabetes inasked for the Libre 2 and she told me ask the nurse she may be able to help then the nurse who I have known for years was fantastic and even showed me here computor that she could not give me the tech but may be I ask the GP so I made a GP appointment and he said why are you not on the complicated diabetic list, I have colitis and some slipped disks pushing on my spine causing a lot of pain so I have morphine and Valium when it is really bad then every 6 months they burn the nerves so the pain can’t get through. He would pass me to the diabetic team and they could give me the unit he would even advice that I should have it.
I rang my GP a number of weeks later to ask when the appointment was coming and they said you had it on sch a date did you not go. “i have not had any appointments though” well the letter says you don’t qualify according to NICE guidelines. My wife drafted a letter to the D team to ask for them to change their mind, this letter is on my medical note but we received no reply.
I took advice from this site and contacted the Lancashire and Cumbria care board who listed and said they would help and they applied for my medical records. Biggest problem is you take morphine or Valium or both I will not wake up if having a hypo. I also decided to contact NICE and they are brilliant and though she said I can not comment on your case I will give you an email to make it clear we are not an excuse not to give the Libre unit and if the doctor thinks you should have it then they should prescribe it. Yes I thought. Months of nothing and this was a big step.
I then noticed my GP now operate a triage system where you fill out a form on line so unlike the letter which they can say they never have seen it this hs to be read. I stated how scared I was of having a hypo and not waking up and had already had a few 3.4s but my wife was working from home on these days. One of the questions at the end was who do you think can help you and my reply was “the person who can prescribe the Libre 2 for me please. I sent this in on a Friday and on Monday I received a text saying I have prescribed the Libre 2 for you at it is at your chemist. Now I noticed it was a one off so when I rang L&C care board they said this does happen and you have to keep asking for it on repeat however they would ring my GP. I was told I just needed to ring my GP every time I need the Libre but to ask for a repeat each time and in the end they will add it to my repeat prescriptions.
Now I had a justification in my concerns but every one who feels this equipment will help them had to push for it.
This may be controversial but I wish the NHS would allow donations toward these things so if I paid £400 per year can I have it not ideal but it may mean others get the unit without having to pay £1300 per year.
I hope this helps someone and any questions I will be happy to answer. I self funded a glucose meter and strips and was testing 7 times a day but the Libre 2 has already changed how I deal with my diabetes and to be fair I seem to be eating more. I have lost close to 3 stone and still a long way to go I will never be in the correct BMI I have a 52inch chest for crying out load but I have gone from a 4 or 5 times xl to just XL. The 2.2 alarm was very scary and I did feel very unwell the glucose gel thing was so difficult to swallow and only lifted me a small amount and we still had a walk to get to the cafe this was a big lesson and an eye opener because without my wife there I would of collapsed it took me the rest of the day to recover. With great advice from here I have reset my alarms to give me more notice.
Stay well everyone and be happy
James